is the story of one family's journey through life with a very special child with Down syndrome and a complicated medical history and how we have learned to DANCE through the tulips.

Sunday, October 3, 2010

The Never Ending Story

Chloe's g-tube continues to be a never-ending story around this house! It goes DAYS without anything and then it'll leak again. So I'm putting in a call to surgery tomorrow to let them know it's still leaking. It's weird how it'll go for days with nothing and then it'll start leaking again. We'll see what they have to say tomorrow.

The "bowel" issues seem to have resolved themselves as soon as we stopped giving her the recalled formula! Coincidence? I think NOT! Whatever, I'm just glad she's feeling better and eating better. I know she was starting to lose a little weight.

As for the fatigue, I never heard back from her endocrinologist re: her thyroid. I'll put in another call on Monday. I want her switched off the generic and I want a CBC done.

We see her ENT (Ear, Nose and Throat) on Tuesday so we'll hopefully know the story about whether or not she needs tubes. I think this week will lead to a lot of answers. Her g-tube, her ears and we'll start to get to to the bottom of her fatigue. She's been a busy little girl, hasn't she?!

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About Me

I am a 44-year-old woman whose life changed when I learned my third child would be born with Down syndrome. Right away I knew that our lives would be changed forever, I just never in my wildest dreams could have imagined it would be like this. This is my family's story.
In the months preceding the start of this blog, starting when Chloe was just 6 days old, she had 7 hospitalizations, 1 open-heart surgery, and 1 g-tube surgery. She was the youngest child at our hospital to ever be put on CPAP at home for Severe Obstructive Sleep Apnea. She had a TINY opening to her airway and therefore frequently suffered from upper respiratory incidents. Chloe also had GERD and was being considered for a Nissen Fundoplication. But she is an AMAZING fighter and the happiest girlI've ever known!